{"id":21515,"date":"2025-11-10T11:13:01","date_gmt":"2025-11-10T10:13:01","guid":{"rendered":"https:\/\/sygeplejevidenskab.dk\/?p=21515"},"modified":"2025-11-10T11:14:09","modified_gmt":"2025-11-10T10:14:09","slug":"foraeldre-til-boern-med-spinal-muskelatrofi-sma-i-sygdomsmodificerende-behandling-haab-sorg-og-behov-for-stoette-og-rehabilitering","status":"publish","type":"post","link":"https:\/\/sygeplejevidenskab.dk\/index.php\/2025\/11\/10\/foraeldre-til-boern-med-spinal-muskelatrofi-sma-i-sygdomsmodificerende-behandling-haab-sorg-og-behov-for-stoette-og-rehabilitering\/","title":{"rendered":"For\u00e6ldre til b\u00f8rn med spinal muskelatrofi (SMA) i sygdomsmodificerende behandling – h\u00e5b, sorg og behov for st\u00f8tte og rehabilitering"},"content":{"rendered":"

\"\"<\/p>\n

Charlotte Handberg, Pia Zinck Drivsholm, Ulla Werlauff, Sanne Okkels Birk Lorenzen, Annette Mahoney. <\/span>Disease modifying therapies for children with spinal muscular atrophy – parents’ experiences of hopes, grief and need for rehabilitation for their child. <\/span>Journal of Neuromuscular Diseases. 2025 Oct 30, 1-15: 22143602251392800. <\/span>doi: 10.1177\/22143602251392800<\/a><\/p>\n

Download Resume som pdf<\/a><\/p>\n

Introduktion
\n<\/span><\/strong>Siden 2018 er tre sygdomsmodificerende behandlinger til SMA blev godkendt i Danmark, og newborn screening blev introduceret i 2023. Med de nye behandlinger overlever flere b\u00f8rn, men med \u00e6ndrede behov for pleje og rehabilitering. For\u00e6ldrenes f\u00f8lelsesm\u00e6ssige belastning er stor og der er sparsom viden om deres behov for information og r\u00e5dgivning.<\/span><\/p>\n

Form\u00e5l
\n<\/span><\/strong>Studiets form\u00e5l, <\/span>var at unders\u00f8ge, hvordan for\u00e6ldre til b\u00f8rn med SMA i sygdomsmodificerende behandling h\u00e5ndterer h\u00e5b og bekymringer relateret til sygdomsprogression, og at unders\u00f8ge deres behov for information, r\u00e5dgivning og rehabilitering.<\/span><\/p>\n

Metode
\n<\/span><\/strong>K<\/span>valitativt design, guidet af metodologien <\/span>Interpretive Description<\/span> og Joyce Travelbees teori om inter-personelle aspekter som lidelse, mening, h\u00e5b og kommunikation. Semistrukturerede interviews blev udf\u00f8rt i for\u00e6ldrenes hjem eller online mellem 29. februar og 3. maj 2024.<\/span><\/p>\n

R<\/span>esultater
\n<\/span><\/strong>26 for\u00e6ldre til 20 b\u00f8rn deltog i unders\u00f8gelsen. 24 for\u00e6ldre blev interviewet derhjemme, og 2 online. <\/span>F<\/span>amilierne beskriver hvordan de oplever diagnose, behandling og den skiftende virkelighed i livet med SMA. De beskriver et st\u00e6rkt h\u00e5b forbundet med den nye behandling, men ogs\u00e5 med sorg og bekymring over sygdomsprogression, behandlingsrespons og mangel p\u00e5 normalitet.<\/span><\/p>\n

Diskussion
\n<\/span><\/strong>Efterh\u00e5nden som behandlingerne til pesoner med SMA blilver udviklet, er omverdenens fokus med rette p\u00e5 de medicinske resultater. Resultaterne fra dette studie minder os imidlertid om den menneskelige dimension: de omsorgspersoner, der lever i hverdagen med h\u00e5b, ubesvarede sp\u00f8rgsm\u00e5l og behovet for holistisk st\u00f8tte.<\/span><\/p>\n

Til sundhedspersonale, rehabiliteringsspecialister og beslutningstagere er budskabet klart:<\/strong> At introducere behandlinger er kun begyndelsen \u2013 f\u00f8lelsesm\u00e6ssig, informativ og rehabiliterende st\u00f8tte er liges\u00e5 afg\u00f8rende.<\/span><\/p>\n

Implikationer for praksis
\n<\/span><\/strong>Med sygdomsmodificerende behandlinger f\u00f8lger et stort behov for en koordineret, mutiprofessionel<\/span> individuelt tilpasset rehabiliteringsindsats, der im\u00f8dekommer for\u00e6ldres \u00f8nsker om rettidig information om behandlingerne og praktiske r\u00e5d om, hvordan de kan st\u00f8tte deres barn i hverdagen. <\/span>Peer-st\u00f8tte, skr\u00e6ddersyet r\u00e5dgivning og anerkendelse af, at ethvert barns behandlingsforl\u00f8b er unikt, blev fremh\u00e6vet som essentielt.<\/span><\/p>\n

Charlotte Handberg, professor, ph.d. MpH, sygeplejerske, RehabiliteringsCenter for Muskelsvind og Aarhus Universitet. <\/span>chha@rcfm.dk<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Charlotte Handberg, Pia Zinck Drivsholm, Ulla Werlauff, Sanne Okkels Birk Lorenzen, Annette Mahoney. Disease modifying therapies for children with spinal […]<\/p>\n","protected":false},"author":1,"featured_media":12698,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_ppp_document_settings_meta":"","site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[158,13],"tags":[],"class_list":["post-21515","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-boern-unge-resume-af-forskning","category-resume-af-forskning"],"acf":[],"jetpack_featured_media_url":"https:\/\/sygeplejevidenskab.dk\/wp-content\/uploads\/2024\/10\/Paediatri.png","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/posts\/21515","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/comments?post=21515"}],"version-history":[{"count":3,"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/posts\/21515\/revisions"}],"predecessor-version":[{"id":21519,"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/posts\/21515\/revisions\/21519"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/media\/12698"}],"wp:attachment":[{"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/media?parent=21515"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/categories?post=21515"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sygeplejevidenskab.dk\/index.php\/wp-json\/wp\/v2\/tags?post=21515"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}